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41,421 members
Mar 29, 2024

1 Year

This topic is about a personal journey of living with an ileostomy, specifically reflecting on the changes and improvements after a stoma relocation. The author shares their experiences and insights from transitioning from a challenging situation to a more manageable and active lifestyle. Here are some key points and advice from their story:

- The author's first ileostomy was an emergency procedure on January 1, 2022, which resulted in a stoma placement that made it impossible to use a pouch. For 15 months, they relied on diapers, which led to severe skin damage and constant pain, managed only with strong painkillers.

- A reversal was initially promised, but two weeks before the scheduled surgery in March 2023, the surgeon informed them that there was insufficient colon for a reversal, and only a stoma relocation was possible.

- The stoma relocation took place on March 30, 2023, allowing the use of a normal pouching system for the first time. Since then, the author has been virtually pain-free, able to leave the house, and resume normal activities. They express gratitude for the support from the community, despite the disappointment of not having a reversal.

- After the relocation, the same surgeon also removed the author's gallbladder. This required five laparoscopic ports to avoid injuring the new stoma, which was placed near the gallbladder site.

- The author uses drainable pouches and suggests using wraps or pouch covers to reduce the noise from the pouches.

- They still experience feelings of vulnerability, occasional doubts about their personal strength, and lingering health issues since COVID. However, they appreciate having a supportive community.

Advice and insights shared by the community include:

1. Reversal vs. staying with a stoma:
- Some members who were technically eligible for a reversal reported that surgeons warned of potential complications that could be as bad or worse than living with an ostomy. Some chose to continue living with their ostomy.
- Complex reversals should be handled by surgeons who specialize in high-risk cases.

2. Pouch noise management:
- Many recommend using cloth wraps or decorative pouch covers to reduce crinkling noise.
- Salts Healthcare "Comfort B" silky pouches are praised for being virtually silent and are available internationally.

3. Routine and supplies:
- A colostomy user shared that they change closed pouches 2–3 times daily and the wafer every 4 days, demonstrating that stable routines are achievable.

4. Emotional support:
- It's important to acknowledge personal resilience. Sharing stories on forums can provide validation, practical tips, and morale boosts for everyone navigating life with an ostomy.
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